Recently diagnosed with 24cm mass in lower abdomen/pelvic area - advise?

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Hi everyone,

I went to the doctor this past Thursday for a general check up and to get a perscription for some anxiety medication. When he was feeling my stomach, he said it felt like one of my organs might be enlarged, and booked me an ultrasound the following morning. So on Friday, I had my ultrasound and he determined that I had a 24cm mass in my lower abdomen/pelvic area. He mentioned it being a large cyst on my uterus, but couldn't tell for sure. I went and did a CT scan, and I'm hoping to have the results back this week, I plan to call tomorow morning.

With what I've been reading, it sounds like this is likely a dermatoid ovarian cyst.

I had no pain or discomfort. I noticed my belly had gotten bigger but like most other people, chalked it up to a bit of weight gain in that area. Now that I'm actually feeling it, it's definitely swollen and "hard" not fat.

Obviously 24cm is a large cyst, and it will need to come out. I've never had surgery before, and it took a lot out of me just to get blood taken/injected with dye intervenously for my CT scan, so to say I'm nervous is an understatement. I also assume they can't tell if it's cancerous or not until they send it for a biopsy?

I've also seen people mention to ask for a gylencologic oncologist for a surgeron. I live in the US and have insurance down here but I'm from Canada and I'm wondering if I should just opt to go back to Canada for the surgery. I'm not sure, in regards to cost, what to expect.

I'm 24, and this all seems so surreal. Any advise appreciated.

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  • Posted

    Hi   In England we have a blood test also, called a C125 to determine whether or not the cyst is cancerous ! 
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    • Posted

      Sorry to say, but CA125 and HE4 are blood markers, that are not providing a 100% diagnose at all. CA125 can be highly elevated when inflammation is going on since it is released by many organs then.

      Also CA125 can be false neg.

      It is one part in the whole picture and mostly used as a follow-up parameter in series.

      A young lady with CA125 600U/ml had no cancer for example.

      So please don't hang your health and sanity on that blood parameter. It is a great one, but not an absolute one.

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  • Posted

    The blood test CA125 is helpful but not conclusive either. The only way they can truly tell is sending it off to a lab though your scans will give indication. Mine was a similar size to yours. They actually told me they suspected mine was malignant. However it wasn't.

    Sugary isn't as bad as you think, I'm guessing due to size you'll have a laparotomy (open surgery) rather than keyhole. Mine was a similar size. The surgery isn't as bad as you think it's going to be, you'll be exhausted for a while but after the initial few days you'll feel much better. Pain medication does help initially but I weened myself off after a couple of weeks. You'll be in for about 5 days, ensure you've someone to look after you at first. Keep a cushion handy for car journeys.

    You'll be fine, the stress is actually more difficult than the surgery. Also do not Google it doesn't help. I'm in England too so can't speak on the hospital care side. Good luck x

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    • Posted

      Thank you for the info.

      Is there a reason they suspected yours to be cancerous?

      I've been googling (bad I know) so I'm so overwhelmed with info. The recovery from the surgery doesn't scare me as bad as going under anesthetic.

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    • Posted

      It was how it looked on the scans I think. My bloods were fine. The surgeon did tell me after surgery that it Looked benign or borderline which was good to know but I still had to wait for tests to confirm. It's was borderline but now I just get six monthly scans to keep check on me.

      Google is the worst thing but I completely understand it's hard not to. Anaesthetic isn't so bad, they're professionals and they keep you well distracted. It's honestly nothing to worry about, it's so quick and slick you don't notice a thing. But if there's anything else you want to know feel free to ask, I read so much around the time of mine x

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    • Posted

      Mine was similar, I knew I'd put weight on but thought it was IBS or something but this "bloat" never went it was rock solid. It's strange cos some people have cysts that are a couple of cm and are in agony. Yet other than weight there were very few noticeable symptoms. I did look about 6 months pregnant right before my surgery. When I first went the doctors she did think I was pregnant even though I told her it was pretty much impossible x

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    • Posted

      I'm looking a few months pregnant myself. I know situations like this are never ideal but it really couldn't have happened at a worse time. I'm anxious to get an actual diagnosis instead of speculating but it my gut I know it is likely an ovarian cyst.

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  • Posted

    justfromerica gyno oncologist is your best bet make a list of questions you want to ask the gyno. Ihad huge cyst 37 cm on pathology report. i had been dieting trying to get rid of my belly with no luck lost 30 lbs after sugery so smaller than i was before.Mine wasnt cancerous most arent . I had a epidural and it was great had no pain then they gave me pain pills only needed them a short time.They gave me three drains ask your doctor if they will also. I had lots of empty space after they removed the cyst that want to fill with water so they use the drains. Because of the characteristics of mine i was worried it was cancer. Try not to worry most arent cancerous.  I have bsbc so just have to pay copays. Im sure it depends on what kid of insurnce you have on what you pay.Any questions feel free to ask its been two months today for me and im feel great.  I will say a prayer you will be fine
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  • Posted

    So young to have such a large cyst. Sorry for your worries. I too am in the US and have suggested either a gynecological specialist surgeon or a gynecological oncologist depending on the issue. I chose the later due to being wrongly advised I had cancer. TG I did not.

    However, in hindsight I am so glad I did not choose one of the general surgeons on the referral list I was given. My friends who have been through various gynecological surgeries have had Drs. who treat and street, which when I met with 2 of the general surgeons is the attitude I felt.

    The surgeon I chose was so respectful and explained in detail why he wanted additional tests, what his concerns were, etc. Upon initial exam he explained why he was 97% sure it was not cancer (whew, he was right, and that was just from my x-rays I brought with me) When the results came back he met with me again to explain them, in detail and also his surgical plan. Although the thought of surgery was scary I felt confident I had chosen the right surgeon. Having been put off by several Drs. who had ordered the x-rays, and didn't find anything wrong I felt I was in good hands. In turn with the added testing he had me prep for a possible bowel resection, which he was able to avoid. But because he was so thorough he found a complication with the artery feeding one of my kidneys which he saved. It would've been strangled completely in a matter of weeks and died! Also, whew.

    In a nutshell, he got everything in a short amount of time because of his vast specific experience. I was in the hospital for a week. He checked in everyday. I was walking one day after surgery, off pain meds during the 2nd day, except to aid sleep at night. Being a tummy sleeper, sleep was hard to come by. I had a low fever the 3rd day, nurse called him at 2:30 am. He spoke with her immediately and prescribed treatment. Fever was resolved by sun up.

    I had a vertical incision and was walking daily from one day post surgery. Of course slowly, but tolerable discomfort. The woman in the next bed had a vaginal hysterectomy 3 days before and said she was in so much pain she couldn't get out of bed. (She had a general surgeon)

    I realize each person and surgery is different but I've been told by other Drs. my scar is a work of art. I usually don't even remember it's there unless I take an elbow from playing with the grandkids.

    The Surgeon's fee was the least expensive cost of the entire thing. The surgical suite, medications, hospital stay were ridiculous! All were hospital fees and I was in a non-private room. Depending on your insurance plan and deductbles you likely only would have to satisfy your deductibles. I had employer insurance and my out of pocket was deductibles on office visits and tests. I never even saw the hospital bill.

    As far as going back to Canada I guess that depends on your support system for post surgical recovery. And if it would be considered elective. My understanding is wait times in Canada can be quite long and women having pain from their cysts can suffer quite a while if they have no other complications.

    I suggest a specialist for the best possibility to preserve your ovary and fertility. Your cyst is very large so that may not be possible. But you need to make clear that is your goal, if having children is in your future plans. Make your list of questions, take notes of the answers. It's so much easier to go back to them when you're calm and you don't remember the details.

    All in all the post surgery discomfort was better than the problems I'd been having for years, that the Drs. dismissed and therefore, so did I. Recovery was a total of 7 weeks, one in hospital, 6 at home. I stayed with my daughter for 2 weeks but then was able to go home thereafter. Walking was the best thing I did for myself. Each day a little farther and felt a little better. The nurses laughed and waved as I did my laps cause most patients did not, so they complimented me on following Drs. orders.

    So try not to stress out, it's not my idea of fun but not that bad either. Short term discomfort for long term health improvement.

    Hope this helps. Keeping my fingers cross for you. Best wishes for a great Surgeon and a speedy recovery!

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    • Posted

      Thank you for all of that information.

      May I ask how big your cyst is?

      I'd definitely like to use a specialist surgeron but would that be something I'd have to refer myself to if my doctor only refers me to general surgeons? Or would I tell him I'd want to be referred to a specialist through him?

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    • Posted

      Also I'm not really concerned with losing any reproductive organs for fertilitiy purposes. I don't want to have kids and if I ever did, even perfectly fertile, I would adopt. But I'd rather them take the ovary than have it grow back.

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